Dell Medical School at The University of Texas at Austin, Austin, TX
Tara L. Kaufmann, Gabrielle Betty Rocque, Elizabeth Ann Kvale, Arif Kamal, Michael Pignone, Antonia Vickery Bennett, John Saxton, Rabecca-Kimberly Hernandez, Angela M. Stover
Background: There is a critical need to develop standardized and feasible methods to monitor patients for unmet palliative needs and direct timely referral to specialty palliative care. We developed a patient reported outcome measure (PROM) measurement strategy to screen patients for multidimensional palliative care needs. Methods: Guided by evidence-based frameworks for early palliative care in oncology, we identified 8 key domains for PROM monitoring that are meaningful and actionable in clinical care and appropriate for direct patient report. We conducted a systematic search for PROMs assessing these key domains using the Palliative Care Research Cooperative (PCRC) Measurement Core resources and the Grid-Enabled Measures Database. PROMs for each domain were compared for content coverage, psychometric properties, proprietary availability, Spanish translation, and attributes (response options, length, literacy demand). Results: We selected 13 PRO items for weekly monitoring (Symptom PROs) and 11 PRO items for monthly monitoring (Palliative PROs) (Table). We did not identify any validated PROMs to assess caregiver burden from the patient perspective. Validated PROMs in short formats for spiritual/existential needs are limited. Conclusions: Existing PROMs are limited in capturing the multi-dimensionality of palliative care needs for patients with cancer, particularly for spiritual needs and patient-reported caregiver burden. Future work will focus on piloting identified PROMs to monitor patients for early palliative care needs and determining thresholds to trigger referrals to specialty palliative care.
Early Palliative Care Domains | PRO Measure1 | Number of Items |
---|---|---|
Physical | PRO-CTCAE | 11 |
Psychological | PRO-CTCAE: Depression/Anxiety | 2 |
Spiritual/Existential | FACIT-SP-12 (1, 4, 8, 12) | 4 |
Distress/Coping | PRO-CTCAE Psychological PCC-CA-36: Managing Uncertainty Subscale | No Additional |
Social Support | PRAPARE: Social Support | 1 |
Caregiver Burden | QDACT-PC | 1 |
Patient-Centered Care | Patient request for referral | 1 |
Communication & Shared Decision-making | PCC-CA-36: Managing Uncertainty Subscale | 4 |
1PRO-CTCAE: Common Terminology Criteria for Adverse Events; FACIT-SP-12: Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being; PRAPARE: Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences; QDACT-PC: Quality Data Collection Tool for Palliative Care; PCC-CA-36: Patient-Centered Communication in Cancer Care.
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Abstract Disclosures
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First Author: Tara L. Kaufmann
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